No Turning Back

As the co-workers exit the buildings for summer break, I can't help but be envious when hearing the chatter of vacations and all the fun things that abound when you have the whole summer to enjoy with your friends and family. As the schools computer technician, I always call the last month of school the calm before the storm. Normally the tech needs slow down and as soon as students and faculty are gone, I am hitting the ground running getting everything ready for the next school year.

I have become accustomed to this and have never had a summer off; except for one time when I was in transition from working at ESD and being hired on with the school district. It was nice, but under the circumstances of being jobless and Camille & Mayleigh not getting to be with me as I visited family in Montana, it quickly became miserable taking a vacation without them. All I wanted to do was go home and before I knew it, the summer was over.
Another reason for feelings of envy is that for the 2nd summer in a row we will be heading to OHSU to spend close to another month in the hospital as our daughter undergoes an Allogeniec Stem Cell Transplant. I am sure no one dislikes this situation more than Mayleigh so please do not feel sorry for us. I can't imagine what is going through her mind as she prepares herself for the battle that is to come. The fears and anxieties have consumed us all but our poor daughter has many meds and chemo to deal with on top of it all. Not to mention she has had to go up to OHSU twice already to sign all the paper work and move forward with the procedure as well as attend a class on what to expect after leaving the hospital. She also had a bone marrow biopsy today and is being fitted for a lung guard tomorrow to protect her during radiation treatment. They will then return home on Friday and have one week before needing to return to start the radiation process. Her life has become nothing short of a voodoo doll filled with pin pricks and needles, mixed with sitting in waiting rooms and doctors offices. I cannot wait for the day that she can be free of all of this and get her life back. That time is now upon us and at this point.. there is no turning back. A bone marrow transplant is about to save her life!

On July 17th, Mayleigh will be admitted to  OHSU where she will undergo a procedure to install a Hickman Line. This supplies a main line to the heart for administering the stem cells, chemo and any other drugs needed. This will be her 3rd port she will have installed. We have also learned that the Ommaya Reservoir will never come out of her brain either...something we were never told when making the decision to have the procedure. Mayleigh has again not let it affect her and said her hair will grow over it so whatevs... :D 

On July 18th thru the 21st she will have full body radiation in which the hopes are to kill off her immune system and prepare it for the new stem cells the following week. After 4 straight days of radiation 2 times a day, she will undergo 2 days of intensive chemotherapy in which they again are attempting to annihilate her system. She will then have 2 days rest unless the stem cells show up early then she will only have one day.

Mayleigh's "Re-Birthday" is scheduled for July 26th (25th if cells arrive early) in which they will take the stem cells from a healthy, American, male donor that is a 9/10 match. This is all the information we know of the donor at this point other than a 10/10 would of been preferred but due to Mayleigh having a unique gene, she mostly likely would never find a 10/10 match. We are happy with the 9/10 to be honest and from what the doctor has said, she matches the most significant and important markers and therefore he feels it should make for a smooth transition. The process is as simple as a blood transfusion so once the stem cells arrive, they will attach it to her IV and administer through the hickman line. I've heard the whole process is very quick and painless as compared to the past. Even the donor has it much easier as they no longer have to do a bone marrow aspiration to harvest the stem cells.

In my opinion EVERYONE should be a mandatory donor at this point. Cancers are prevalent in every one of our lives and it would only increase the potential number of matches those in need would have to choose from. If this is something you are interested in you can easily sign up at http://www.bethematch.org and you can save someone's life today! I really hope we have a chance to meet this individual as he probably has no clue how much we appreciate his generosity and selflessness as he secretly saves our daughters life. You couldn't possibly give a greater gift and we are extremely humbled by the opportunity to find a match somewhere on this giant rock that could potentially end her battle with cancer forever!

Camille and I will be taking her to Portland for the beginning phase. We will be there the week she gets radiation as well as the transplant week. We really have no idea what to expect other than what we read from others in the ALL Facebook groups and transplant groups that we frequent. There are risks and rewards all over the board and ugliness that we can only hope to avoid. One of the biggest scares is GVHD or Graft Versus Host Disease. Symptoms can include:

• Rashes, which include burning and redness, that erupt on the palms or soles and may spread to the trunk and eventually to the entire body
• Blistering, causing the exposed skin surface to flake off in severe cases
• Nausea, vomiting, abdominal cramps, diarrhea and loss of appetite, which can indicate that the gastrointestinal (digestive) tract is affected
• Jaundice, or a yellowing of the skin, which can indicate that your liver is damaged
• Excessive dryness of the mouth and throat, leading to ulcers
• Dryness of the lungs, vagina and other surfaces

GVHD can be acute or chronic. Its severity depends on the differences in tissue type between patient and donor. The older the patient, the more frequent and serious the reaction may be. In most cases the odds are in her favor due to age, where she's at in her treatment, and how well of a match she has. She's young, she has very little disease present, and she has a good donor match. We again are trying to avoid letting our minds wander but there is definitely a million and one things that can go wrong. Mayleigh is staying as strong and courageous as ever though and we could not be more proud of her when facing a life or death decision such as this. So many things have aligned for all of us to get us where we are. Between our families, the school district, Ian and all the doctors and nurses involved; it truly takes a team to make something as ugly as cancer go away forever and there is no reason to believe she will have any other outcome but success.

Once OHSU feels she is healthy enough to be released, Ian will take over and will become her full time caregiver. He will have a ton of responsibility when it comes to the health and well being of Mayleigh. He will also have to quit his job to move to Portland to be with her so there is additional stress from finances and change from our tiny little town to the big city. He will have much help from our generous Aunt and Uncle, (Michael & Kathryn Becker) who have opened their doors to both of them to stay, including Camille & I when needed. We don't know what we would do without their help and we are forever indebted to them for their generosity. Thank you so much Michael & Kathryn!!! <3

We have also found out that my mother has taken a job in the Portland area for 3 months to also be close by. This makes us feel even better knowing there is another set of hands to give Ian breaks from time to time. She also works in the medical field so it's nice to have her questions and input when speaking with the doctors. Needless to say, Camille and I will have to continue to work around our schedules to be able to find time to come visit. She will be required to stay in the Portland area for at least 100 days after she is released for checkups and appointments. With all things going well, she could be home by Christmas. We are trying to keep the faith that everything has gone smoothly for us so far so why worry now...everything has fallen into place just like it normally has when things were meant to be and she damn well deserves a 2nd chance at life and to be cancer free. No parent can fully enjoy life when their child is living a nightmare such as cancer. It's a constant stress and worry that never goes away no matter what time of day it is. We are confident that day is nearing us sooner than anticipated. :)

This past week we took a little 4th of July camping excursion, the first of the year no less, as we feel we needed just one last get away before we gear up for our next adventure. Mayleigh and her friend Cassondra came up and stayed with us for a night; then Mayleigh returned for 2 additional nights with a surprise visit from my mom. We had an awesome time and it's always hard to leave but it was even harder this time knowing what we have in store for us. There's something about camping that just soothes my mind and soul and I've often thought that I could easily survive in the woods and put our technologies aside. I'm sure it would get tiresome but a week just doesn't last as long as you'd like when your in a state of zen.

We again thank each and every one of you that has sent a prayer, or a thought, or a positive vibe Mayleigh's way. We need them now more than ever as she prepares for the fight of her life. We would also appreciate any cards or letters of encouragement as she is in the hospital. We do not yet know what room she will be in but I'm sure if you send it to: OHSU C/O Mayleigh Workman, 14K Knight Cancer Institute, 3181 SW Sam Jackson Park Road, Portland, OR 97239-3098. Sending anytime in the week of the 17th is best. She'll be there 3 weeks and it takes about a week to get to her room.
If all things go well she will be released on August 4th which is 2 days before the World Footbag Championships in which I plan to compete in with all things going as planned. I continue to practice as much as I can so I am preparing as if it's a done deal. She is going to beat cancer and I am going to be the oldest routine champion in footbag history! :D I would just take Mayleigh beating cancer... there will be no greater feeling in the world to know that our baby girl is done with this chapter of her life and she can go on to adulting and stop having mom and dad all up in her business. :D

Mayleigh's Shrek mask :D

We do love the togetherness though and if for anything, through all of this, it has given me more time to get to know her and appreciate her the way she should be appreciated. She is one of the most loving, generous and caring friends one could ever have and I just want to see her surrounded by love cause that is what she brings to every one around her. Your beyond inspiring Mayleigh; your our greatest creation and we couldn't be more proud of how strong you have been through all of this. <3